It is interesting that in talking to autistic individuals their concept of religion is usually enmeshed within previous sensory experiences of the scratchy clothes they had to wear in church or the constant reminders to keep quite or to remain seating still while attending service. To top it all there is this recollection that Sunday was their free day but instead of playing they were forced to attend Sunday school immediately after mass. For many, autistics and nonautistics, such religious experiences were highly bothersome and downright unpleasant.
There is an importance difference between religion and spirituality. Religion is an organized system of beliefs, practices, rituals and symbols meant to profess our belief in the existence of an ulterior power to whom we honor. Going to church is part of our religious practices. It may be that wearing scratchy clothes is also part of our religious heritage. Spirituality on the other hand is a personal endeavor to understand questions regarding the meaning of our lives and our relationship with the sacred or transcendent. You can be spiritual but not religious.
On a personal level, my spiritual beliefs come from my experiences as a physician as I reflect on the fragility of life and the tremendous power of prayer. I have had spiritual moments when having warm thoughts, remembering early episodes of my family upbringing, or when admiring the beauty of a new moment in life (e.g., when each of my newborn daughters first grasped my finger). Greater than 70% of Americans indicate a belief and trust in God or something higher and 90% have used religion as a way to cope. It is not surprising to learn that spiritual beliefs are associated with lower suicide rates, less anxiety, and even less substance abuse. Even though this is an important subject it is rarely broached by physicians when talking to their patients and their families. This apparent lack of concern may have to do with avoiding the perception of proselytizing, troublesome ethical concerns, conflicts with their own beliefs, or trying to avoid opening Pandora’s box for the rest of the interview. For me it is not whether you agree or disagree with spiritual beliefs; it is rather whether you care enough to ask?
Asking family members about spiritual beliefs can be awkward for many physicians. I see most of my patients at clinics or in a hospital setting. The need for spirituality can sometimes be perceived from the child who cries easily, acts out (unexpected bad behavior), who hugs everybody in the hospital, receives a bad diagnosis or is in grief. I can see the need to talk about feelings when the child keeps his bed surrounded by plush animals (as if to form a defense barrier) and when parents leave a treasure trove of framed photographs by the window sill giving the appearance of an altar. Even infants can experience spirituality. They can’t philosophize about God or express abstract and multiperspectival religious thinking, but they can experience love by touching, singing or sharing a smile.
Temple Grandin in her book “Thinking in Pictures” ends her narrative with a chapter on spirituality. Temple had a religious upbringing attending mass at an Episcopalian church every Sunday. In the Autism Asperger Digest (http://autismdigest.com/religion/) she says that, “The autistic/Asperger’s mind tends to dwell in negatives; this is something parents and professionals should be aware of and find ways to counteract. It is beneficial for a young child to be schooled with positive teachings. One way to do this is through religious training. Helping a child understand what to do in concrete ways, demonstrating to him or her actions that are giving and positive and helpful to others, can counterbalance this tendency toward negative thinking. If a child asks about something negative like stoning as it’s mentioned in the Bible, I would recommend parents tell the child that in modern times, people no longer do that. Keep it concrete and simple.”
I recently wrote a blog about coping mechanisms and would like to repeat my thoughts about sublimating losses and gaining acceptance through religiosity. “All things work out for the good for those who love the Lord”. From the New Testament, Paul addresses the hardships we face in life and talks about how we can use our problems to help others facing the same difficulties. Praying may give you a new outlook on life. I have often told his story as happening to a friend but it happened to me many years ago in one of those special moments with my daughter (there were fewer of them as she got to be a teenager). I was praying with her for those suffering from AIDS and cancer. My daughter had lost of all of her hair to an autoimmune condition and now it was seemingly affecting other endocrine glands of her body. I took the opportunity to explain how alopecia (hair loss), AIDS, and cancer have a common link regarding autoimmunity. Then I explained about the disproportionately small amount of research done in a non-life threatening condition such as alopecia when compared to those other disorders. So, I suggested that we pray for a cure to AIDS and cancer. This cure could lead to a breakthrough in other autoimmune disorders including alopecia! So while we pray for others, the prayers help us as well.
Dr. Larry Dossey has written several articles and books on the effects of prayer on illness. According to the double-blind studies he and others have conducted, the majority of sick people that were prayed for got better more quickly and had fewer complications. The prayers didn’t have to be any formal or structured type tied to any particular religion or belief; they were within the prayer’s belief structure. Just remember, ask and you shall receive, seek and you shall find, knock and the door will be opened. One of the members of a list server that I used to direct on alopecia areata lost her hair in her teens. She begged God for her hair to grow back. Sometimes it would for a while, only to fall out again, with the resultant devastation and eventual loss of faith that God had not heard her. Today, she realizes that she needs to pray for acceptance and strength to handle whatever comes down the pike. You usually get what you “need” but not always what you “want”. She has found much peace in this knowledge.
“Sometimes I thank God for unanswered prayers Remember when you’re talkin’ to the man upstairs That just because he doesn’t answer doesn’t mean he don’t care Some of God’s greatest gifts are unanswered prayers.”
from Garth Brooks’ song, “Unanswered Prayers”